Autism: The New Epidemic

Barbara and Sheldon Helfing never
expected to have one autistic child, much
less two. Their son Leland, now 5, was born
prematurely and began showing signs of a
neurological disorder before reaching his
1st birthday.

"Leland had very poor balance and he
wasn't yet responding to us with words or
gestures," Barbara said. "But initially autism
did not come up because he was clearly
interested in his surroundings and in other
people."

Leland began getting help through the
state's Early Intervention Program. However,
since the state agency did not require a
diagnosis prior to providing services, the
Helfings had no idea that their son's
problem might be genetic. When Nathan
was born, the Helfings rejoiced in their
healthy new son, but by the time he was 18
months old, the heartbroken parents could
no longer hide from the fact that their
younger son had also fallen prey to the
disorder.

The Helfings are part of a growing trend that
is affecting the Jewish community in
unprecedented numbers. The statistics
most often quoted in past reports about
autism state that autism spectrum disorders
occur in four to five in every 10,000 births.
However, according to the Autism Society
of Los Angeles, a soon-to-be-released
report on children in the state of California
shows a 400 percent increase between
1986 and 1996 -- or one in every 500 births.

In terms of the Jewish community, a study
being performed at Stanford University's
School of Medicine is looking into how
families of Ashkenazi origin are affected
(see box). Researchers stress that so far
there is no indication that Ashkenazi Jews
have more of a tendency toward autism than
the general population. However,
professionals who work with autistic children
say the overall increase in cases has had a
definite impact on Jewish families.

"While I would not say the Jewish community
is any more hard hit than other communities,
we are certainly seeing plenty of Jewish
families with this problem," said Dr. John
Lutzker, chair of the department of
Psychology and director of graduate training
at the University of Judaism in Los Angeles.
"I have contact with the (state-run) Regional
Centers and with the school districts and
they cannot put a lid on this. It is indeed an
epidemic."

Dr. Sandra Kaler, a psychologist
associated with the Neuropsychiatric Unit at
UCLA, agrees.

"The Jewish community has been equally
struck by this and I think there was an
assumption we would not be," Kaler said.
"Now when I go out to a Jewish preschool to
do an evaluation, I frequently see one or two
children with autism, where before it was
very rare to see more than one."

Autism is a neurological disorder that
typically appears during the first three years
of life and includes disabilities or delays in
the areas of social skills, communication
and cognitive development. Children can
either be born with the disorder or develop
normally and then regress, usually between
the ages of 18 and 24 months. It occurs four
times more often in boys than in girls (one
reason why scientists suspect a genetic
link). About 70 percent of children with the
disorder also show some degree of mental
retardation. Autism is considered a lifelong
disability, but with early intervention many
children learn enough skills to lead
independent lives.

No one knows for sure what has caused the
skyrocketing numbers of children diagnosed
with autism. Because of the gender bias
and because so many families have more
than one child with the disorder, several
ongoing studies are focusing on the
existence of a genetic link or mutation.
Other scientists are examining
environmental factors like diet, vaccinations
and pesticide exposure.

Part of the rise in incidence may be
attributed to a change in the definition of
autism spectrum disorders. For many years
it was easy to tell children who fit the classic
diagnosis of autism: An inability to relate to
others, poor or no speech, violent or
self-injurious behavior, repetitive or
seemingly meaningless activities. However,
the diagnosis has evolved to include
children who relate fairly well socially but
who have delays in other areas like
language or fine motor skills. (This is
sometimes called pervasive developmental
delay, not otherwise specified or
PDD-NOS.) On the other end of the
spectrum are children who have solid
communication skills but find it difficult to
relate to other people, sometimes
becoming obsessed with a narrow range of
ideas or objects, a disorder known as
Aspergers Syndrome.

But Lutzker said the change in evaluations
cannot completely explain what
professionals are seeing in their offices.

"It's an interesting dilemma: Is it that we are
more aware of autism or are there truly
more incidents? I'm inclined to lean toward
more incidents just because of the endless
number of children we are seeing these
days," he said.

Lutzker, a behavioral psychologist, is a
strong advocate of the discrete trial training
method of treating children with autism.
Discrete trial training (also called applied
behavior analysis or ABA), was designed
by Dr. Ivar Lovaas of UCLA in the 1960s
and uses behavior modification with both
positive and negative reinforcement to
shape the child's response. Other
developmental professionals prefer using
the newer "floor time" therapy. Created by
Dr. Stanley Greenspan, a psychiatrist at
George Washington University Medical
School, this teaching method is
child-directed -- the therapist follows the
child's lead in playing games and
performing activities that enhance the child's
communication skills. Many autistic children
also receive speech and occupational
therapies.

Working out a successful treatment plan is
one of the many battles that parents such as
the Helfings find overwhelming at times.
Both their boys have different strengths and
weaknesses and each requires a program
that supports their needs. Therapy, including
a home-based ABA program for Nathan
and Greenspan sessions for both, often
takes up eight or more hours a day for each
child. Ironically, both Barbara and Sheldon's
professional training makes them
well-suited to the task of raising children
with special needs; Barbara has a Master's
degree in education (including a credential
in special ed) and Sheldon teaches
psychology at local community colleges.

Barbara said the hardest part is dealing
with family and friends who don't seem to
grasp what life with autism is all about, the
constant toll taken on the family's time and
emotions and finances as they research
every option for helping their sons. She tells
the story of a friend who called up in tears
because her daughter had missed out on
getting into a gifted class by two points on a
test. Barbara said it was hard not to laugh
because "I wish for one moment that Leland
or Nathan had a problem like that!"

"What it comes down to is our kids are in a
perpetual toddlerhood," she said. "Their
mental age is not where their chronological
age is; that's what makes it more taxing for
us as parents. Other parents spend a lot of
time talking about their kids'
accomplishments and what we talk about
may not seem like much. But the things
other people take for granted, we really
appreciate."

The family has struggled to find their place
in the Jewish community. Currently they are
not affiliated with any synagogue. Barbara
said when Leland was a toddler she joined
a Mommy & Me class at a large
Conservative temple, but was disheartened
by the response of other mothers when
Leland finally attempted to speak.

"He was vocalizing, making these sounds
that weren't quite words, but it was the first
time he had even tried to talk," Barbara
said. "And I saw two mothers pull their
children away from him, like it was
contagious. Instead of applauding that this
child was finally speaking, they reacted like
he had a disease."

To add insult to injury, when Barbara called
to tell the teacher she and Leland were
leaving the class, the teacher asked if she
could tell the other mothers that Leland was
a special-needs child unsuited to the
program. Barbara said the feeling she got
from the experience was that children who
were different posed a threat to the
reputation of the highly touted,
"academically enriched" program. The
rejection, she said, still hurts.

Sheldon is quick to point out that not all the
family's experiences with synagogues have
been negative.

"There are some good programs out there,"
he said. "But the general population reacts
from fear -- what you don't know might hurt
you. The misnomer about autistic kids is
that they're crazed and violent, when in fact
they are so locked inside themselves they
would not hurt anyone."

Dr. Bryna Siegel, author of "The World of
the Autistic Child," has seen many Jewish
parents during her tenure at both Stanford
and the University of California at San
Francisco. Siegel, who is Jewish, said the
emphasis on education and the high
expectations of parents and grandparents in
our culture makes it more difficult to accept
a diagnosis of autism.

"The problems Jewish families have in
coping with autism is by and large what I
see in most well-educated, upper
middle-class families," Siegel said. "There
is a much greater sense of disappointment
in having a child with a disability as
opposed to a working-class family. And
there isn't as much room in the Jewish
community for these children as, say, in the
Mormon community where they are seen as
a chance for family members to grow
spiritually through love and compassion.
Judaism really doesn't have an outlook like
that."

Siegel said that in some cultures where
large families predominate, having a
special needs child is less of a burden
because the work can be shared among
more people.

"But except for the Chassidim, Jewish
families are not having a lot of kids. For
those families, this child may be their only
one, and that can be hard," she said.

The Los Angeles Jewish community has
been slow to respond to the recent surge of
families with developmentally delayed
children. Few programs exist to teach these
children Jewish culture and values. In the
San Fernando Valley, there are special
needs programs at Valley Beth Shalom,
Temple Judea and Kol Tikvah, but except
for VBS, these programs are limited to a
few hours one or two mornings a week. The
standards of admission for Jewish day
schools such as Abraham Joshua Heschel,
automatically eliminate many children with
disabilities, including autism. Other schools
will only take an autistic child if a one-to-one
aide is provided, which may be out of the
financial range for parents already pushed
to the limit by medical treatments.

The University of Judaism, however, recently
established a Master's degree program for
people interested in working with autistic
and abused children, which will put more
knowledgeable, appropriately trained
teachers out in the Jewish community. For
those already in the field, the Bureau of
Jewish Education, at its recent Early
Childhood Education conference, hosted a
seminar on Autism and Aspergers for
educators along with several classes on
evaluating children for speech and language
delays.

But the Helfings' best advice to other
parents of autistic children is this:

"Know your child, their strengths and
weaknesses," said Barbara. "Know the law,
or hire someone who does. The truth is, in a
situation like this the playing field is not
even. To the degree you're informed about
your child, the disorder, what resources are
available and about your rights is the
degree to which you will be able to help your
child succeed."

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